Month: February 2017

Meet Marisa from Portugal!

Marisa Costa has lupus and is currently planning to run a marathon in Aarhus, Denmark August 6 this year! She needs all the help she can get and has created a crowdfunding page (see link beneath). Please help by sharing her story and showing her your full support ? “I am Marisa Costa from Portugal. […]

NEW – LUPUS EUROPE “catch-up”

At the beginning of this year, LUPUS EUROPE launched a new initiative, called “LUPUS EUROPE catch-up”. The aim is to better keep in touch with our member groups throughout the year. The first member group we spoke to was Norway. Katharine Wheeler spoke to Kari Ødegård about the challenges and difficulties they face and […]

Live Twitter Feed

Lupus Europe Follow 4,187 2,836

Lupus Europe is the umbrella association of currently 29 national lupus self-help organisations throughout Europe, and supports people with lupus in Europe.

Retweet on Twitter Lupus Europe Retweeted

; EUPATI @eupatients ·

29 Nov 1597540958417178624

🗣️ Register for our next #EUPATI #Essentials training today🙌
✔️ Content builds on #Fundamentals training
✔️ Professionals experienced in #patientengagment
✔️ Establishing successful relationships with #patients
More 👉 http://bit.ly/3VnJiLG
#Training #Professionals #Register

Reply on Twitter 1597540958417178624 Retweet on Twitter 1597540958417178624 3 Like on Twitter 1597540958417178624 5 Twitter 1597540958417178624

Retweet on Twitter Lupus Europe Retweeted

; Chris Wincup @chriswincup ·

3 Dec 1599062034426916864

🧵 Short summary thread on our recent publication looking at the impact of Anti-Rituximab Antibodies in #SLE with our recent manuscript published in @RheumJnl

This has been a story that we have been looking at for a few years now

💻 Link -

Anti-rituximab antibodies demonstrate neutralising capacity, associate with lower circulating drug levels and earlier relapse in lupus

AbstractObjectives. High rates of anti-drug antibodies (ADA) to rituximab have been demonstrated in patients undergoing ...

academic.oup.com

Reply on Twitter 1599062034426916864 Retweet on Twitter 1599062034426916864 29 Like on Twitter 1599062034426916864 72 Twitter 1599062034426916864

Retweet on Twitter Lupus Europe Retweeted

; Laurent ARNAUD @Lupusreference ·

3 Dec 1598961637796429824

✅ Very happy to report that we have started a multilateral discussion to harmonize the way antinuclear antibodies (ANA) testing results are communicated to physicians and patients. This is absolutely crucial to decrease diagnosis delays for #autoimmune diseases such as #lupus 👍

Reply on Twitter 1598961637796429824 Retweet on Twitter 1598961637796429824 17 Like on Twitter 1598961637796429824 151 Twitter 1598961637796429824

Retweet on Twitter Lupus Europe Retweeted

; Marc Scherlinger @m_scherlinger ·

1 Dec 1598252143240265728

We are what we eat .. and this is also true for our immune system including #Treg cells in #SLE. See our paper with @GeorgeTsokos out now in @ScienceAdvances 🔓 https://tinyurl.com/ymvam4x3 see thread

Reply on Twitter 1598252143240265728 Retweet on Twitter 1598252143240265728 10 Like on Twitter 1598252143240265728 43 Twitter 1598252143240265728

; Lupus Europe @LupusEurope ·

2 Dec 1598716879236993025

The Portuguese Lupus Association was born in 1992. Since then, they have provided #SLE patients with all kinds of support (even financial). Did you know they even have a house where patients can stay when they have appointments in Lisbon? Get to know more! https://buff.ly/3Voj6Ak

Reply on Twitter 1598716879236993025 Retweet on Twitter 1598716879236993025 0 Like on Twitter 1598716879236993025 5 Twitter 1598716879236993025

Retweet on Twitter Lupus Europe Retweeted

; Antony Psarras @AntonyPsarras ·

2 Dec 1598712529596841985

Excellent read in @NatRevRheumatol about #HydroxyChloroquine in #lupus. Current guidelines recommend HCQ at 5 mg/kg per day or lower to minimize toxicity. New evidence raises concerns about the risk of #SLE flare associated with such doses. #rheumatology

Hydroxychloroquine dose: balancing toxicity and SLE flare risk

Nature Reviews Rheumatology - Contemporary guidelines for the management of systemic lupus erythematosus (SLE) recommend ...

www.nature.com

Reply on Twitter 1598712529596841985 Retweet on Twitter 1598712529596841985 8 Like on Twitter 1598712529596841985 20 Twitter 1598712529596841985

Retweet on Twitter Lupus Europe Retweeted

; EULAR @eular_org ·

2 Dec 1598679018592768002

📢 Only 3 days left until the Research Webinar on EULAR ASBTRACT 2023, tips from the Scientific Programme Chair with Prof. Marta Mosca, Professor of Rheumatology (IT)

📆 Monday, 5 December 2022, 17:00 - 18:00 CET

Click here to learn more and register 👉https://pulse.ly/ee2eyhe3rb

Reply on Twitter 1598679018592768002 Retweet on Twitter 1598679018592768002 3 Like on Twitter 1598679018592768002 9 Twitter 1598679018592768002

; Lupus Europe @LupusEurope ·

2 Dec 1598639363914715137

Studying the characteristics of pregnant women with #SLE is key to implement the necessary tools to ⬇️ the risks in this population. @gerardespinosa5 et al. from @BCNatalResearch & @MAS_Clinic have conducted a study in pregnant women with SLE, #APS or Non-Criteria Obstetric APS

Autoinmunes-Clínic @MAS_Clinic

Take a look at our latest collaborative work between @BCNatalResearch and @MAS_Clinic 👇👇👇👇
https://doi.org/10.3390/jcm11226822

Reply on Twitter 1598639363914715137 Retweet on Twitter 1598639363914715137 4 Like on Twitter 1598639363914715137 13 Twitter 1598639363914715137

Retweet on Twitter Lupus Europe Retweeted

; Autoinmunes-Clínic @MAS_Clinic ·

1 Dec 1598363857352679425

🔴 #CàtedraUB_GSK_EAS
Are you ready?

GRAHAM HUGHES AUTOIMMUNITY ORATION-22
Prof. Y. Shoenfeld @oldtautwit
The Mosaic of Autoimmunity

📅 viernes 02.12.2022
⏰12:00-13:00 GMT+01
Aula Magna @CampusClinicUB
ℹ️ http://ow.ly/w96x50LRfua
Registration free➡️ http://ow.ly/36iZ50LRfu9

Reply on Twitter 1598363857352679425 Retweet on Twitter 1598363857352679425 3 Like on Twitter 1598363857352679425 5 Twitter 1598363857352679425

Retweet on Twitter Lupus Europe Retweeted

; SLEuro @SLEuroSociety ·

30 Nov 1597921083940024320

If you lost the Lupus White Book webinar, held on October 21, you can listen it at the following link https://www.youtube.com/watch?v=xmoe9_gGrrI

Reply on Twitter 1597921083940024320 Retweet on Twitter 1597921083940024320 5 Like on Twitter 1597921083940024320 16 Twitter 1597921083940024320

Retweet on Twitter Lupus Europe Retweeted

; EMEUNET @EMEUNET ·

29 Nov 1597470673982603264

💻 We want to explore the current landscape of social media by #rheumatology professionals:

How can we support global scientific exchange? Reduce disparity in educational opportunities online?

Take the survey now 👉 https://pulse.ly/fqmlxt7d95

#eularEMEUNET #EULAR #rheumatologist

Reply on Twitter 1597470673982603264 Retweet on Twitter 1597470673982603264 1 Like on Twitter 1597470673982603264 5 Twitter 1597470673982603264

; Lupus Europe @LupusEurope ·

1 Dec 1598364057580568582

Lupus patients are at high risk of infections due to #SLE & its treatments. In this great review, @DrMiniDey @ElenaNikiUK et al. compare infection frequency, site & type across immune-modulatory drugs. Great work and visual that will aid when prescribing! https://buff.ly/3VoiAST

Reply on Twitter 1598364057580568582 Retweet on Twitter 1598364057580568582 5 Like on Twitter 1598364057580568582 20 Twitter 1598364057580568582

Retweet on Twitter Lupus Europe Retweeted

; The Lancet Rheumatology @TheLancetRheum ·

29 Nov 1597533234681856001

@MuhammadShipa @MikeEhrenstein @VersusArthritis @LUPUSUK Molecular signature-based decision making in the era of targeted therapies for systemic #lupus erythematosus

Linked Comment by @IoannisParodis https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(22)00358-7/fulltext

Reply on Twitter 1597533234681856001 Retweet on Twitter 1597533234681856001 4 Like on Twitter 1597533234681856001 12 Twitter 1597533234681856001

Retweet on Twitter Lupus Europe Retweeted

; The Lancet Rheumatology @TheLancetRheum ·

29 Nov 1597531752955875329

NEW RESEARCH—In an exploratory analysis of the BEAT-LUPUS RCT @MuhammadShipa and colleagues examine biomarkers for response to B-cell-targeted therapies in systemic lupus erythematosus https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(22)00332-0/fulltext @MikeEhrenstein @VersusArthritis @LUPUSUK #OpenAccess

Reply on Twitter 1597531752955875329 Retweet on Twitter 1597531752955875329 17 Like on Twitter 1597531752955875329 36 Twitter 1597531752955875329

Retweet on Twitter Lupus Europe Retweeted

; RDI @rarediseasesint ·

28 Nov 1597270582730506243

On #UHCDay📅Monday 12 December, join us to make #UHC for rare diseases a reality for the over 300 million PLWRD worldwide.
👉Register:https://bit.ly/UHCRARE

"UHC for rare diseases: Developing Key pillars together" with @UNHumanRights @CSOs4UHC @UHC2030 @FEDER_ONG @irdirc✨

Reply on Twitter 1597270582730506243 Retweet on Twitter 1597270582730506243 3 Like on Twitter 1597270582730506243 10 Twitter 1597270582730506243

Retweet on Twitter Lupus Europe Retweeted

; Laurent ARNAUD @Lupusreference ·

30 Nov 1597841215055360003

✅ Oh that's cool, we've just been granted a special link for free and direct access to our @JAADjournals paper about the #history of systemic #lupus for the next 50 days 👍 The paper is not new but now is freely downloadable by everyone 😎
https://authors.elsevier.com/a/1gAGehQtRJfKE

Reply on Twitter 1597841215055360003 Retweet on Twitter 1597841215055360003 32 Like on Twitter 1597841215055360003 96 Twitter 1597841215055360003

Retweet on Twitter Lupus Europe Retweeted

; EMEUNET @EMEUNET ·

29 Nov 1597516175608582145

Find out the latest #EMEUNETwhatisnew about #SLE or #ConnectiveTissueDiseases clinical research by @cristianasieiroat on our website

Read more 👉 https://emeunet.eular.org/sle_ctd.cfm

Do you have any cases of exposure to belimumab during pregnancy?

#EULAR #eularEMEUNET #rheumatology

Reply on Twitter 1597516175608582145 Retweet on Twitter 1597516175608582145 2 Like on Twitter 1597516175608582145 7 Twitter 1597516175608582145

Retweet on Twitter Lupus Europe Retweeted

; Laurent ARNAUD @Lupusreference ·

29 Nov 1597523514508312576

✅ SAVE THE DATE for a #WEBINAR about #Lupus and #FATIGUE that we will organize for @ern_reconnet with @LouKawka on the 18th of January 2023 at 17:00 (CET) [which is 11:00 EST]. WE WILL PRESENT THE RESULTS OF THE #LEAF study about fatigue in #SLE 👍

Reply on Twitter 1597523514508312576 Retweet on Twitter 1597523514508312576 28 Like on Twitter 1597523514508312576 85 Twitter 1597523514508312576

; Lupus Europe @LupusEurope ·

29 Nov 1597618638030344196

Anti-drug antibodies (ADA) can be produced after administration of biological therapies.
ADA to RTX are common in SLE patients & demonstrate neutralising capacity & associate with ⬇️circulating drug levels & earlier relapse.
Study by @chriswincup et al. https://buff.ly/3FcMwfm

Reply on Twitter 1597618638030344196 Retweet on Twitter 1597618638030344196 10 Like on Twitter 1597618638030344196 37 Twitter 1597618638030344196

Retweet on Twitter Lupus Europe Retweeted

; ERN ReCONNET 🇪🇺 @ern_reconnet ·

28 Nov 1597213513252241411

We're very lucky that we will be co-organising with @eurordis this pilot "Team building training" with the partecipation of #ERN #ePAGs and WG chairs testing the training.

This will be a great opportunity to reinforce existing collaborations and improve how we work together.

Reply on Twitter 1597213513252241411 Retweet on Twitter 1597213513252241411 2 Like on Twitter 1597213513252241411 11 Twitter 1597213513252241411

Live Facebook Feed

LUPUS EUROPE

6 days ago

Do you have #lupus?

Are you 18-30 years old and a volunteer of your national lupus group or interested in volunteering? In that case, get in contact with us and join us for exciting opportunities to exchange ideas and have some fun!

Send an email to zoe@lupus-europe.com and we will tell you more … ... See MoreSee Less

View on Facebook

View Comments

Likes: 4
Shares: 5
Comments: 0

Comment on Facebook

LUPUS EUROPE

2 weeks ago

In Lupus Europe, we work hard to fulfil our mission. A very important part of that work is to not only be successful in the projects we undertake, but to have high standards and to work collaboratively with #lupus patients, our member organisations and also with lupologists!

This morning we had a medical roundtable meeting, where we had the opportunity to discuss our Strategic Plan for 2023-2028 with a team of incredible lupologists: Professors Arnaud, Houssiau, Limper, Mosca and Schneider gave us incredibly useful feedback today and we had a very productive meeting with them! ... See MoreSee Less

View on Facebook

View Comments

Likes: 31
Shares: 0
Comments: 0

Comment on Facebook

LUPUS EUROPE

3 weeks ago

We are delighted to announce the start of our annual #KickLupus competition! Send your submission in the format of your choice (drawing/video/writing) & tell us:
How has volunteering for a #lupus organisation helped change your life?
Amazing prize to be announced soon! ... See MoreSee Less

View on Facebook

View Comments

Likes: 10
Shares: 9
Comments: 0

Comment on Facebook

LUPUS EUROPE

3 weeks ago

LUPUS EUROPE • Newsletter • November 2022

Have you read our latest newsletter?
Read all about it by going to
mailchi.mp/lupus-europe.org/lupus-europe-newsletter-november2022 ... See MoreSee Less